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Need Advise with AS

Posted , 7 users are following.

claudia02963
claudia02963

Hi Everyone,

I am 38 years old and was diagnosed with AS approximately 2 years ago. I have chronic back pain and had a piece of disc taken out, the back pain didn't disappear totally and was referred to a rheumatologist who did a blood test, MRI and confirmed I had AS. He has only been prescribing me Mobic and Celebrex. I have issues bending but mostly my hip pain is excruciating. I have trouble standing for longer than 20 mins...can't do much about the house and at times all I can do is lie down.

I get stiff in the morning but find it gets worse the more I am active. My rheumatologist is useless and I am at a loss what to do next.

I tried PT to strengthen my core as recommended by my doctor who also advised yoga or Pilates but I am extremely inflexible....I've tried physio...they give me exercises but they don't do much either....most days I lie on a hot water bottle and my partner tries to massage my hugely tight muscles near my hips and spine....i am not sure on a diet and tried magnesium but that hasn't helped much either....

Can someone give me suggestions I am at a loss ...I want my life back....

Thanks

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  • felicity_c
    felicity_c claudia02963

    Posted

    All I can tell you is walking,swimming and exercising in water is the only way if you have such pain. I promise you it will help if you can join a class. I did that a couple of years ago and it really helped combat the pain so long as you have a good Aqua teacher - not just leaping around to music but being really technical and working on your core and lower back strength.I have a damaged hip through AS ( both actually but one worse than the other) so any other from of exercise is just too painful. I dont take the drugs they're soo keen to prescribe - just naprosyn and pain killers when its unbearable because I dont want to do anymore damage to my organs than I need and theres no proof that any of these aggressive drugs work.

    Good luck - I hope you find a way to manage your pain.

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    • claudia02963
      claudia02963 felicity_c

      Posted

      Thanks!

      I walk allot but don't swim as much so will give some classes a go. I am also not keen on all the drugs but it seems to be the only thing that helps my pain. I am going to try to loose weight, I am a little heavier so this also may help. The AS makes me feel a little useless to be honest. I would love to be more active....

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  • khairnar
    khairnar claudia02963

    Posted

    Sorry to hear about your condition. Have you asked doctor, how he confirmed AS? Inflammation in mri or high esr etc? What job you do, is it sitting job? I am not doctor but trying to understand more. Many times second opinion also matters.
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    • claudia02963
      claudia02963 khairnar

      Posted

      Hi

      My AS was diagnosed via an MRI and blood tests although (they looked for the AS marker, not sure what that was) my doctor felt the latter was inconclusive and that I should get a second opinion from a second rheumatologist.

      My pain is more severe in the right hip and I am also quite often very tired. I work in an office setting with a stand up desk that I use from time to time.

      C.

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    • khairnar
      khairnar claudia02963

      Posted

      I have same symtoms started at same age and i am also 40 yrs old. but my rhummy says its not AS, it is most likely tight tigh and back muscles. I done 4 MRIs till now. Definetely take second opinion. Only HLA-B27+ doesnt mean AS. 

      What is MRI says, what is ESR and PCR values?

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    • claudia02963
      claudia02963 khairnar

      Posted

      Hi

      The MRI showed inflammation in both my sacrio joints, two years ago it wasn't so painful it was mainly my back but the last six months my hips have become incredibly painful.

      What does ESR and PCR stand for and how do I check their values? Is this in the blood tests??

      Thanks

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    • khairnar
      khairnar claudia02963

      Posted

      Blood reports shows esr, crp values. Have you done hla b-b27 blood test? inflammation in sacro joints is hallmark of AS but still want to know other values mentioned above.
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  • Yogee
    Yogee claudia02963

    Posted

    I am sorry for your suffering and to be diagnosed at such an early age.  All the recommended treatments you mentioned are helping me greatly so I am confused as to why they are not alleviating any of your discomfort.  Also,  I have LESS stiffness with movement.   You mentioned your diet......yes, that, too, helps.....eat more fish, gluten free diet...no dairy or red meat ....  I added  a curcumin supplement, which seems to help.  Maybe the doctor needs to change meds.....I don't know....wish I could be of more assistance. Other posters will have more advice......again, so sorry for your misery.

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    • claudia02963
      claudia02963 Yogee

      Posted

      Hi

      Thanks, I will look into curcumin supplement. I am in Australia so not sure if they have that here. I was reading about TMF blockers or the bio drugs but the side effects worry me....

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    • PatMcC
      PatMcC claudia02963

      Posted

      Hi Claudia. I have been on anti TNF drugs about 6 months. I inject Benepali once a week. No side effects whatsoever. Has changed my life. Used to take upto 30 tablets each day just to function. Have not taken any since starting the injection. My view is that you should try them asap. If they do work for you it may give you the movement to do the exercises which are vital to slowing the progression of the condition. The very best of luck to you Claudia. Pat
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    • claudia02963
      claudia02963 Yogee

      Posted

      I have made some diet changes today to see if this all helps. I have heard that Turmeric does help inflammation. I usually eat quite healthily allot of green veg and fish not so much red meat, try to avoid process food and sugar where I can. Thanks for the tips!
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    • Yogee
      Yogee claudia02963

      Posted

      Good for you!  As you know, it may take several weeks to a month before you notice significant changes with the change in your diet.  I take 500 mg curcumin twice daily.  Have been on it for 3 wks and I Believe it is decreasing the inflammation.  If you try the supplement, do your research...there are so many products out there.  Are we allowed to mention another website for AsA on this website?
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    • claudia02963
      claudia02963 Yogee

      Posted

      I am not sure but have managed to find another site based out of Melbourne called moved and they can recommend rheumatologists and phisiologists ...there isn't really a society in Sydney. Allot of people are saying magnesium really helps too as a muscle relaxant...

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    • Yogee
      Yogee claudia02963

      Posted

      Trying to post...I take Biomor.  I read where sleeping flat on back without pillow helps with spine alignment.  Tried it and it helps.  I find I need to do shoulder, hip, calf muscle exercises daily to keep flexible.  I used to only need to do them once a week but I guess the AS is progressing.  Hope you are doing all right.
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